I am 43 years old and nine months ago i was completely wiped out by pain at the front of my tailbone that radiated back and front - to just above the bladder. I had flu like symptoms and crawled to the doctor who gave me antibiotics for a suspected UTI (although tests were negative). Since then i have had continuous pain in the same spot - it feels like an abcess inside which throbs and saps my energy. I can't sit/lie comfortably and have taken to swaying from side to side when standing for any length of time. Sometimes it feels like dragging, at the best of times it feels like a very light pins and needles and numbness in the area. On other occasions the GP has given me laxatives or painkillers. I have definitely noticed that it is worse from ovulation onwards. I have about a week pain free a month.
The whole time i have also had painful bowel movements and bad constipation - as if the nerves of the bowel are affected. I can't poo properly and feel pressure in that area as I if i alway need to go.
My periods have always been troublesome but have got so close together i bleed every 3 weeks (although not heavily) and two weeks out of 3 i have pain and unbelievable tiredness i can barely look after my family.
I had a scan and they saw 2 small fibroids in my womb and a 2cm x 2cm patch of "something" at the back and bottom outside of my uterus. The scan lady said it was almost certainly a fibroid as it was in the exact position of the pain and was resting on my bowel and back. However, the consultant said fibroids "don't cause pain" and it might be endometriosis as the "pouch of douglas" was tender.
I was so relieved that something was seen after so many months of pain and weird symptoms that i was grinning during the scan but the consultant was quite dismissive after and i felt deflated when i came out. Can anyone offer any advice or similar experience? I am having a laparoscopy next week and i am so worried that i am going to wake up and they are going to say that they don't know what my symptoms are caused by? Will they get rid of the endo if that is what it is or will i have to have a second operation? I am sorry to waffle, but my mind went blank and i came out with so many questions. I felt like i shouldnt be having these symptoms as the fibroids and endo were small, but I am so tiny myself maybe i have symptoms before things have got large - even the doctor said "oh there isnt much of you" maybe i just have a low pain threshold, in which case am i a wimp?????? What is an endometrioma and is it different from endometriosis - my ovaries are clear so i have no cysts there although have had PCOS in the past/ivf/miscarriage.
I am so confused. Can anyone offer any advice.
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greenpeel1969
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I came on here to see if I could find new information to prepare myself for operation next week ... I joined up after reading your post as I have many similarities with you ... I am also 43 and due to have a laparoscopy next week. It is an' if and but' situation, depending on what they find. I could have, worse case scenario a laparotomy for a hysterectomy.
Other than some stressful times in my life I have had regular periods and not been on the pill. Two years ago I was diagnosed with Endo, it was managable and when it got bad, I took to my bed. Oftentimes coming in from work showering and in to bed to sleep right through.
October last year I had an odd period that came and went and didnt really amount to anything. Similarly for the next three months but massive headaches and increased pain and obvious signs for Endo. In february I had heavy bleeding/ flooding, pelvic pain and back pain. After 3 weeks I went to surgery where two GPs sent me off with antibiotics for suspected thrush and to awate results for chlamydia. As they both said they 'couldnt feel anything/ didnt think there was anything wrong with me. Pardon. Same sexual partner for 22 years! Apparently it can lay dorment. Hmmm. I called for results which were negative and was quoted; no further action' by the receptionist.
Third time lucky, another GP (who doesnt do ladies examinations!) referred me to Gynae, Bloods Somographs. I had been to out of hours as was writhing in pain for days at a time.
The results have been wide and varied ... CA125 results high (GP didnt volunteer so as not to alarm) then down to 178, down again I cannot remember what but was well above 35, but not concerned as Endo will show as a false positive result.
Diagnosed with Endo, PCSO etc, fibroids (and "what fibroids"), polyps, kissing ovaries (stuck together and hiding behing uterus) nearly 9cm endometrial cyst right ovary, hidden/ not there/ too painful to find or complex or not sure/ mass inside cyst on left ovary of same size.
Hence I will find out how serious and which op I had, when I come round after surgery. :/
Awwww, what a time you have had. I guess we are the same, waiting for that moment when we wake up to see what they find/did! It is very interesting that endo can be felt for the first time at our age, i had wondered that. I too have not been on the Pill (infertility - there was no point) and had fairly regular periods, usually painful but not always.
I too have had the same sexual partner for 20 odd years, and i am convinced i was only referred to a consultant after 4 GP visits when i was asked by a male GP if it interfered with my sex life. Of course it does - why would i want my poor husband anywhere near me when i am in agony!!!!! It seems my sex life was more interesting to the GP than my ability to poo/walk properly/look after my family and exist on a daily basis normally. Or maybe i am just being cynical lol.....
It reminded me of first being diagnosed with PCOS. My periods stopped completely when i was a teenager. I went to the doctor, and he was adamant i was pregnant as i was away at college for the first time (and therefore MUST have been having sex - i was in fact still a virgin!!). He kept asking me if my boyfriend had been to stay with me and did a pregnancy test there and then in front of me as if it was going to be positive.
Years later when i had my first and only son i complained of severe pain, on Christmas day, begged to be taken to hospital. My GP came out, PATTED ME ON THE HEAD (i kid you not) and told me i probably had a UTI. He said "i would hate to be a girl". It was in fact a kidney stone which i passed with blood clots hours later when i did make it to hospital. (not pleasant when 8 months pregnant but it made the pain of child birth a breeze!!!!)
It is frustrating, especially when i have pain, pointed the the exact spot/was very careful to describe the symptoms and they did in fact find something there on the scan, yet it is not supposed to hurt so therefore it can't be anything. It really shouldnt be this difficult should it? I appreciate that these things are difficult to diagnose....
Good look for next week too, i will check back and look for you to see how you do....
Have you not had your pre-op? Thats when you see your specialist and they run through what they will do and you have chance to ask questions. I have only briefly fread through the pamphlets.
One of the pamphlets they issued to me is an explanation of the operation, titled 'diagnostic laparotomy', once they fill you with gas they can have a look at the damage and go from there. Cut away the endometriosis. Also in my case drain and remove cyst and likely right ovary. On my form gynae wrote "+/-" a lot :/
Got pre-op this week, so its useful that you said it might fill in some gaps for me. I must make a mental note of the questions i have, but you know what its like when you sit there....
I couldnt help but laugh at some of your comments, perhaps there could be a 'I KID YOU NOT' (IKYN) area ... an OOO (out of hours) doctor on pressing on my abdomen said I was full of wind, (not the first time someone told me that lol), yeah watch out if you press too hard, I dont need to warn you haha! of my symptoms, told the same doc, that I wore a size too big trouser to work and wish I could undo them before lunch, he said oh come on just go and get bigger trousers ... IKYN. A week or so later another OOO doc said I have a grumbling appendix, I went in with symptoms of that and cyst, but had just explained newwer symptoms that of gastric/ gall stone or bladder problems. If anyone asks me where the pain is now I sahll tell them here and gesture from chin to groin.
Re sex etc ... as soon as I said it had affected our sex life, he sat there all thoughtful like, and reffered me to whomever could see me first lol
I can co,pare some examinations and scans with how a baker would knead bread.
Had miscarraige almost twenty years ago, wouldnt have had second daughter, if that little angel had survived.
Ha Ha, your comment about kneading bread made me laugh.
This particular lady doctor who was rather large, which is fine except that i didnt notice it let alone comment on it in a personal way, stood over me and said "i am going to examine your abdomen.....oh, there isnt much of it" I am incredibly small (i always have been no particular reason) but perhaps i was being over sensitive when she commented on my size......I am thinking of opening my reproductive organs to the public as so many people have explored them i may as well make some money out of it!!!!
i don't stand for it any more. A doctor marched in to examine me internally when i was in hospital for the kidney pain and about to have my son prematurely....i screamed out "I prefer a man to at least introduce himself before he does that to me!!!!!" The midwives sniggered but i don't think he was impressed....
Sorry for your miscarriage....a truly awful experience that makes us stronger. How lovely you have a second daughter, I am so grateful i have my boy. He really is a miracle. My thirties were spent trying to have more kids but unsuccessfully.
Have a good and hopefully pain free help, thanks for being there this evening.
As for endo - you can be absolutely full of the stuff, but if none of it is near nerve endings, you might not ever know. This is how I started out, I didn't know I had endo until a cyst (otherwise known as an endometrioma) twisted on its stalk and ruptured; when they opened me up I was at stage 4 and had had absolutely no idea that anything was wrong. Well, apart from years of gruesome periods that I had been told was "Just Woman's Stuff"...On the other hand, if you have even the tiniest piece of endo right on a nerve ending, it will be agony. So it doesn't follow that you have to be full of endo to be full of pain.
Fibroids can grow outside of the womb so it's quite possible that it's that that's causing your pain - but endometriosis does quite like to settle in the Pouch of Douglas. On the other hand, endometriosis itself doesn't usually show up on an ultrasound - but THAT being said, at my last scan, they found a large cyst on my right ovary, and a couple of plaques on the left side, and I'm wondering if they saw plaque in your Pouch of Douglas.
The best way to find out exactly what's going on will be via your laparoscopy, and they'll use the scan results to guide them if they can't see anything more 'obviously' wrong. Unfortunately however, because endo doesn't show up on a scan, they might encounter more than they are expecting, in which case they may not physically be able to remove it with a laparoscopy, so until they get in there, they won't be able to tell you exactly what they're going to do. And I don't want to depress you, but even if they can remove what they can see in terms of endo it's likely to come back; once you've got endo, you've usually got it for life
Whatever happens, you are certainly not a wimp! I'd be really interested to know how you go with your laparoscopy, feel free to message me if you'd rather
Good luck, and lots of love
C xxx
Hi Greenpeel - I'm sorry to hear about your symptoms and can certainly relate.
I am 2 months post op for my first laparoscopy - a laparoscopy that only went ahead because I nearly shot off the bed when I was having my scan and they pressed the probe into my back (or pouch of douglas). This was despite no endo being detected during the scan. Amongst other places endo was found and lasered off my pouch of douglas and although its still early stages one of the first things I've noticed is the lack of pain in my base of spine so please don't lose hope. Its just odd for me as my pain here was always attributed to an old skating injury (ie falling on my arse!) and I wasn't expectng to get any relief from that!
Please don't worry about being a wimp - mine was only classed as mild but it had taken over my life and I was the only person in the waiting room for the lap doubled up in pain before the Op. I too was scared/worried about what they would find but definitely the best thing I've done, weirdly knowing what is going on inside makes it much easier to cope.
Hi I have been suffering a lot of tingling in my lower spine radiating upwards and tingling in my fingers, do you think that could be a result of the Pouch of Douglas, to be honest I have never heard of it until now, I think i may ask my GP, or the one of many GPs I seem to see, half dont even know Ive had a hysterectomy or endometriosis! Good luck with everything xx
I have had tailbone pain, bladder pressure, intestinal spasms from hell for 6 months. My drs have tried steroid shots, in my spine, and tailbone, gave relief very briefly. I am miserable, the gastroenterologist says it is from having half my intestine removed, but that was 2 years ago. I don't think he is right. He told me to use miralax and benfiber, plus probiotics. None of this is helping. I have even put a tens unit on my back which actually helps, but is difficult to use constantly. I had 2 colonoscopies and they showed severe intestinal spasms and he just says I have to live with it. Not sure I can. he also said antispasmodics would cause more problems and does not recommend them. I am ready to scream at all the drs. Every dr has an opinion but really not a clue what this is. I have see many with this problem and it all comes down to opinions only. I use a back massager when I can that does help for a while. I take alprazolam at night so I can sleep and it does relax the problem. I am afraid of anymore steroids, due to eye problems from the steroids. I also have severe constipation and poop like I am a baby. And forget sex, that is impossible because it makes it worse. Wish I could help us both, but there are many of us with the same problem.
Hi guys, really useful to read all your comments. I'm 45 and been having bladder pain for well over a year now. At the same time I had urinary retention and painful sex. Also been having numbness and tingling in feet/hands. Was diagnosed with ibs 17 years ago funnily enough and didn't realise there may be a connection with endo.
Two of my sisters have endo also unfortunately. In February I had a cystoscopy to check the inside of my bladder. All was well and I hoped that the bladder pain would subside as they stretched my bladder at the same time, which can sometimes help. It didn't.
Just before my operation, they took a urine sample and there was blood in it. A few more tests were taken a few weeks later, and the same. Sometimes it's clear, sometimes not. I also had some right flank pain and pelvic pain, along with intermittent bleeding so pushed for a referral (notice I had to press for this). I got the referral, but only for a kidney scan. As they had done a cystoscopy and it was clear, clearly my bladder issues and intimacy was of no relevance any longer. I mentioned I should have also had a pelvic scan, as dr indicated I would get both, but because I wasn't booked for pelvic and didn't have a full bladder, there was little to see. It was however very tender in the lower pelvic area. Consultant advised the kidneys were fine and I should go back and see my dr but what was causing the right flank pain and intermittent bleeding? Went to see Dr again and asked at that point if it could be endo, she said it could be and suggested I take brufen - yeah exactly! That was back in April.
Pain is still ongoing, I also recently had bright green discharge, although tested and not bacterial, and read that could be a link to endo. So back to see dr today and asked outright if I can be referred. I also asked if the nerve issues could possibly be linked, he said the lower extremities could be. I have trouble with my legs ankles and knees. Knees on the insides and also sciatica up the left side. I also cannot stand for great lengths of time.
The outcome today is that I am being referred to Gyny and told they may do a CT or a laparoscopy. So time will tell.
Hope your outcomes were successful. (My message to anyone new to endo reading this, it's YOUR body, and you know when something is not right. So take action and tell the DR what outcome you would like from your appointment). It seems that is the only way to get to the bottom of it.
I'm sure you will have had all of your surgery by now. Just wanted to share that after 25 years (I'm now 43) of being admitted with 'non specific abdo pain' I have had my 4th laparoscopy and found what has been causing my pain for all these years. I have extensive endo and numerous 'chocolate cysts' with one large one being tucked between abdo wall and pouch of Douglas. I had a hysterectomy 3 years ago yet endo wasn't diagnosed at that point, so my ovaries were left in situ.
I am so relieved to finally have a diagnosis because I have had many hospital admissions where they did ultrasound only and told me I was constipated and sent me home with laxatives. No scan was ever done after the laxatives because they had sent me home by that time.
Now they have taken many biopsies and sent me home after an injection of an implant to turn off the ovaries. Have to go back in 4 weeks for results and to discuss further surgery to remove both ovaries and cervix. They will also remove as much of the endo deposits as possible in this op.
I could honestly cry because my poor partner of 11 years has put up with little to no sex life because of my pain. And after so many doctors told me there was nothing wrong I started to think it was in my head. And, although he never said a word, I'm sure he must've been thinking the same.
Really hope your surgery was successful and I can look forward to a good outcome. ❤️
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